Thursday, November 18, 2010

Hospital Antics: Hurry Up and Wait

Day 4 of Chief's rotation on service, and we're back to square one: nothing.

The redo of the Thyroid levels came back normal.

The redo of the ANA panel (Lupus) came back negative.

The spinal tap came back negative.

Vit A and Folate deficiency tests: normal.

Plenty other miscellaneous tests: normal.

There are still some other Vitamin deficiency tests we're waiting on. Maybe they'll be back tomorrow.

But I'm not holding my breath that they will give us any clues. Sorry, but the disappointment happens too often. So yeah, I'm guarding my excitement of any answers tomorrow. I guess I'd prefer to be pleasantly surprised in this instance.

In the meantime, he has upped her Depakote levels to a whopping 120mcg/mL (normal ranges are 50-100). That started this morning. I must admit, I was originally somewhat irritated over the med change. I felt like Chief was doing nothing but masking the symptoms of an underlying problem. And when you mask the symptoms, it's a whole lot easier to ignore the issues. Kinda like, "out of sight, out of mind." Over the past 3+ weeks, there's been a whole lot of that going on (to the doctors' credit, it wasn't intentional), and I'm not interested in any more of it.

But he made a good point: there's nothing wrong with treating symptoms, as long as you also try to fix the underlying cause. For example: it would be terrible negligence to give a kid with a broken arm some morphine for his pain, without resetting the arm. And truly, the opposite would be true as well. The two CAN go hand in hand, and should. But in my frustration, I was tired of seeing her symptoms addressed, and not the "why" of it all for the past month. So, I originally preferred to ignore the symptoms, just let them run their course, and keep them front and center. Because you can't ignore a kid that screams all day, but you can feel a whole lot more comfortable with one who just lays around. And I didn't want her to be ignored or overlooked again.

Why I felt this way, I can't say for sure. I'm most likely paranoid, frustrated, feeling in the dark.

Tired.

And to act like Chief's not doing an insanely incredible job of trying to help Michaela, would be completely unfair and disingenuous of me. He's NOT ignoring the underlying problem. It's just the cause of all this is NOT obvious in any way, shape, or form. Couple that with the fact that he's as much a victim of the system as Michaela and I are, and it looks like we're doing very little. We run labs, and we wait. They come back fine, we run more labs, and we wait.

Every day....hurry up....and wait.

I still feel like we're exactly where we need to be. I still feel like she's getting the best care in the world. Yes, the WORLD. There is not another doctor on this planet that knows Michaela like Chief does. There may be smarter doctors (he would say so himself), or more experienced doctors (take Boston Children's or Johns Hopkins, for example), but there isn't another doctor out there who has the advantage of KNOWING Michaela over the course of 6+ years of difficult-to-treat epilepsy than Chief. He knows the intricacies of HER. The little nuances and the normalcies. I KNOW she's in good hands medically. I have utmost confidence in her care.

But he's right. The symptoms needed to be treated. It was obvious on Thursday the 11th when she had the grand mal seizure clear out of the blue. She was having one of her hissy fits, when she just slumped over. That just doesn't happen. But it was a sign that she was physically growing tired of the constant intensity of the psychosis. I was worried about that. Worried that her body would just start going into constant seizures again---from the stress.

So, I guess he made the right decision. That's why we pay him the big bucks :)

****

I left the unit about 11 to go spend a few minutes with some friends, and grab a bite to eat. I also had been invited to share my story with the board of trustees for the Ronald McDonald House at 12:15 or so.

It was slightly unnerving, standing up in front of all these very nicely dressed, executive types. But it went well, and I was given an ovation :) I had several members come and speak with me personally after the meeting, thanking me for sharing and for giving my input. One lady in particular, has a son with a seizure disorder as well. She mentioned that her family owns a shop in the Huntsville area, and that I should feel free to use her name any time I went there....that they love to adopt people. I guess I've been adopted :)

The man responsible for the Birmingham house, Mr. Max Cooper, came and shook my hand and thanked me for telling my story too. He is very old, and very kind. To be honest, I didn't think Mr. Cooper was still alive. His bust is in the foyer of the house, and I just assumed he had passed away. Well, I was very glad to be wrong. He is a wonderful person with a heart for sick children. It was a pleasure to meet him, and tell him why I'm so appreciative of the House.

****

Come to find out, while I was gone, Michaela had her worst day in a week. She screamed for 3 hours straight, from 11 to 2. She finally knocked out, but when she woke up this afternoon (about 3pm), she went back into a psychotic episode. Here's what she did...

The nurses tell me that she was 3 times louder and more intense during the 3 hour stint earlier. Hard to believe, to be honest. My ears are hurting pretty good from the current session!

I guess, when it comes down to it, there's no masking of the underlying problem going on. Increase of drugs or no....she's still pretty messed up. There's no denying it.

Yours Truly.....

I am a 34 year old wife and mom of 6. This journal was started to chronicle our adventures with our daughter and the treatment of her rare epilepsy. However, while it was written, it became a journal of our everyday lives as well. Hope you laugh, cry, and think as you read....I sure did :)